Cockroach cafe - summer

[GnomeDePlume]

A new thread.

This is a place where anyone dealing with elderly parents/relatives/friends can rant, vent, scream into the void.

There is no judgement just understanding, support and good advice.

It’s the same with Mum @bigdogpaws. She knows everyone’s names, birthdays, what they do for a living, long term memory is great, knows who the Prime Minister is (good going at the moment!). Can’t tell me what she’s had for lunch or where she’s put the central heating thermostat remote which she can’t understand anyway, struggles to put the subtitles on the TV and can’t understand any letter she gets so write ‘Bestiswest to check this’ and stuffs it in a random drawer.
I drew a diagram of the remote control and instructions how to use it inside her diary but she’s put the diary somewhere that she can’t remember.

On top of the Alzheimer’s and the Hydrocephalus I strongly believe that she has undiagnosed dyslexia and ADHD (My DC are both dyslexic and one has AdHD so I’m well versed in the signs) and I think this complicates things for her anyway now my DF isn’t around.

And the same here too. DM seems fine at appointments and on the phone to relatives. Its the small things which cause chaos, and she gets really pissed off if her carer or I tell anyone. Thankfully I have her carer for backup as neither DM or family believe me when I say her mental capacity is declining fast. Its frustrating every direction.

We’ve put stickers all over things so we can say ‘it’s the red sticker’.

It’s exhausting, but then how tiring is it for her?!

I explained to my kids that when we were young the devices weren’t invented, so we didn’t develop a mental filing cabinet for that specific thing. So while I can work with and know about the ‘the cloud’, it’s an active process of knowing what’s what. When I am under the weather, stressed, tired, it’s much harder to remember what does what, what goes where, how we sign in to this that and the other. It’s in a temporary filing cabinet that isn’t always accessible 🤣

MIL is the same too she cannot carry out the simplest of tasks even though her memory is ok. PIL had what we call "tv dementia" meaning it was classic symptoms that everyone would recognise. MIL's is harder to deal with as she can remember lots of things but is unable to press a number 1 on a tv remote control.

@BestIsWest I'm pretty sure mine is autism/ADHD (my adult DCs are diagnosed, I know the signs very well too). Some of the traits have been problematic for my entire life and are now being exacerbated by forgetfulness and not having Dad to prop her up.

@ElderlyDilemmas exactly, she used to drive my DF nuts as she was always moving his glasses, papers, keys etc then forgetting where they were.

She once took the dog to the supermarket, let her out of the car for a moment then drove home forgetting all about her. She remembered about two hours later, drove back and the dog was still sitting there waiting. Or putting eggs on to boil then taking us to visit my grandmother (these are family legends as you can imagine).

This sounds exactly like my Mum. Unfortunately, despite a very clear diagnosis, there are some family members who insist that she's 'not that bad' because she can do X. When X is not much use without also being able to do other related tasks. So for example she can remember exactly what food is in her fridge and approximately when it was put there, but she can't process how to make that in to even a simple sandwich etc. Or she can remember that she has a ready meal in the freezer and knows that it is cooked in the microwave for 4 mins, but pressing 4.00 and start on the microwave (that she has had for years) is beyond her (even with someone on the end of the phone trying to explain it).

I think the fact that MIL often presents as not that bad means that DH does feel guilty about the fact that she is now in a care home. But the reality is she cannot actually do anything to look after herself and is not safe anymore.

Yes. And my siblings still think she’s just difficult.

I mean, they’re not wrong, but she’s also struggling.

I’ve got much better at realising her anger isn’t aimed at me. It’s directed at me, but I’m not the cause of it. She throws around ‘no one’ a lot- no one cares, no one rings, no one listens, no one takes her on holiday… I’m not included in the ‘no one’, apparently.
Though she’s right about the last one mind. I like a holiday when I’m on holiday 😅

My relative changed his mind and agreed to the Memory Nurse interview. The private neurologist wants him on memantine to slow the memory deterioration and address the periodic public temper tantrums. But of course, the relative says there's nothing wrong with him. He doesn't remember what the neurologist said and he hasn't read the letter to the GP. He doesn't really understand why he was referred to the Memory Clinic and the GP was of no help.

I have to step back. He doesn't listen to me. There's very little I can do and it's causing me to lose sleep. He's still managing the basics and I just have to leave it there.

Somethings going on with mum (CH, alzheimers). She's been sliding further down the ghastly slope for a couple of months (very quiet, sleeps a lot, not interested in anything, struggles to understand instructions or suggestions, difficult to wake and not eating or drinking much). They are feeding her I think. The last few days she's had a fall, high BP, and an "unusual discharge". God, my mum would have been mortified that I knew that. A culture and bloods are being taken and BP repeated every day. I'm away until Monday but (excellent) DSis has been visiting. I'm thinking she could be near the end. It's just so fucking, unremittingly awful.

I’m not convinced drugs are that useful, unless you are the person experiencing it and actively choosing to stay as well as possible.
If someone is already confused and obstructive, I’m not sure staving off decline is in anyone’s interests.

Obviously I’m not an expert and there may be much more to it. But, MiL has had a diagnosis for years- maybe ten years? I assume she’s on medication because she’s doing really well. But all that time has bought her, is the opportunity to fall over more, to be more dependent, and more restricted in what she can do. And worst of all, the opportunity to see her husband develop dementia, decline and no longer be able to look after her. Which she’s upset and annoyed about. I think they’d have been happier had she declined faster. 🤷‍♀️

Thanks, @PrizedPickledPopcorn .
Yes, it's a terribly difficult road.

@PrizedPickledPopcorn That's an interesting perspective re medication. My DM has recently been prescribed memantine. She's keen to take any medication that might help her and of course that's absolutely her choice to make. My (quite possibly mistaken) understanding was that medication can help make things more manageable for longer (and in her case, less frightening as she has a lot of unpleasant delusions) but wouldn't really prolong life. I suppose I'd assume that, short of a fall etc related to the dementia bringing about a sudden death, her lifespan would be basically the same regardless of dementia medication but with the medication she'd have a greater proportion of 'good days' than bad. I'd be very interested to know more about the impact of dementia medication on life span- if it's just prolonging the agony I'm not sure I'll be as quick to encourage mum to keep taking it. It's not something I can ask her HCP because she gets very upset at even the vaguest hint that she is getting to the end of her life and has sometimes had delusions that people are conspiring to kill her. For the same reasons, she has ruled out discussing ReSPECT forms as she tells me that 'everyone knows' doctors will just use that to kill off old people. I have tried to explain that it's just about helping people understand her wishes but she gets very annoyed at me and tells me 'Yes, yes, you would say that wouldn't you- they've obviously got you taken in.'

@bigdogpaws please don’t think I actually know or understand anything- I don’t even know what MiL is on! All I know is she was diagnosed a long time ago and we prepared ourselves to lose her as she was already quite frail and confused. The diagnosis was mixed dementia but she does have other complex health needs.
She has definitely had good years since then, it’s just that she’s now still here, her husband has declined very quickly, she needs a lot of care and gets very cross that her husband just sits there doing nothing and dozing. He’s happy as Larry if people just leave him be. He eats, drinks, watches tv, dozes, then starts again. He does have falls, but that’s not helped by the state of the house. Mil is a shopaholic.

Your Mum’s situation sounds a bit different. She may well feel much better and have more usable time to enjoy.
Mil has always needed a lot of support, and her comparatively good health means she’s now out performing her body and her husband!

DM seems to gave stabilised after the recent crisis but as with each crisis what we get back is a bit less. She now cant swallow food beyond a couple of mouthfulls so is pretty much living on multivitamin juice and an occasional cup of tea.

I was told she has a chest infection and is being given ABs for it. I did have to restrain myself from saying 'in god's name, why?'

@GnomeDePlume I honestly can’t believe they gave her ABs. That’s beyond wrong.

Did they consult with anyone about the ABs? Pneumonia was once known as the old man’s friend.

I forgot to ask whether she’s in a hospice or hospital.

@GnomeDePlume Your poor Mum. To me it just seems cruel to try to cure the infection in these circumstances. It's certainly not what I would want for myself. But given the way your DB has been I'm not surprised that's what has been done. I imagine they're afraid of him claiming they've been negligent in not treating her when there is medication available. I fear I will be in a similar position when the time comes with my Mum as my brother is adamant she should receive the same treatment that would be given to someone young and fit. Sadly I can't imagine him allowing anyone to let her slip gently down the ramp. Watching this must feel like torture to you- you really do have my sympathies.

To be fair sometimes ABs are given to relieve discomfort rather than in the hope of a cure.

Having read someone’s comment elsewhere about how well prepared one side of her family is for old age- paperwork in place, downsized, carers/stairlifts in place etc, it made me think about those of us with less organised/more obstreperous parents.
I think I might take to commenting on how sensible Sheila is have done x,y,z, and how I’ve heard that John has just decided to stop driving. If they can talk at great length about how other children take their parents on holiday, etc, then I can talk about how other parents carefully prepare!

@GnomeDePlume I hope you don’t mind me asking if your DM has a PeACE plan in place https://nwknowledgenow.nhs.uk/wp-content/uploads/2024/12/PEACE-information-leaflet.pdf.

My DM doesn’t have a Health & Welfare LPA so before she lost capacity I arranged for her GP to do a DNR and a PeACE plan. The latter included if DM needed intravenous AB requiring a hospital visit/stay then she opted not to have them just oral AB and pain relief.

Sorry Gnome, I just caught and email from DM and went off on a little rant of my own. Nothing to compare with what you and your Mum are weathering. 💐

A letter arrived today forwarded from DPs old address ( now rented out as they are in care home) from the DVLa regarding a report of unsafe driving. Doubtless the same one that I submitted a mere 9 months ago. Thank goodness we didn’t actually wait on them to do anything as he hasn’t driven since about a week after that report when he ended up going into the hospital and I begged the doctor if she did nothing else ( she didn’t) to at least tell him he couldn’t drive.

Yes I am sure I should have notified the DVLA months ago that he was no longer driving bit amongst all the other admin and care home visits, it didn’t seem that important as he doesn’t have access to a car anymore.